Don’t be proud….sometimes you just need a little help

The funny thing about my MS is that I was treated for it 5 years before I was ever given a definitive diagnosis. One day my feet got numb and then my legs. The docs suspected it but sent me to Korea anyways…..I was in the military. When I returned from Korea and arrived at my next base, I was toId I shouldn’t have gone to Korea and I actually evaluated for this condition instead. Thus started the chain, of does “she have it or does she not”.

No one really paid any attention to it until I came back from Iraq in 2008. Two months after I returned (and might I mention I was in the location of the burn pits), I started getting a tingling sensation in my feet. That sensation moved up to my legs and eventually to my waist. I was immediately sent to the ER for evaluation where I finally met a wonderful military neurologist who started me on the path I needed to be on. I was immediately given 3 day’s worth of steroids via infusion. I was diagnosed with “probable MS” i.e. transverse myelitis and started on Copaxone. Note I still don’t have a diagnosis.

For three years I did that shot and functioned at a level I considered to be normal. I kept wondering why everyone was out to get me, everything was everyone else’s fault, got fired a few times from leadership positions due to inability to handle emotions, never slept and just felt a depression I could not get rid of. For three years I blamed it on others and insisted that they were all doing the wrong. The turning point came when I switched from Copaxone to Gilenya and forgot where I was at one day at work. I had to go into the ER yet again as they thought I was having a heart attack. Nope, they chalked it up to panic and sent me back on my way. By this time all my coworkers really did think I was crazy and I can’t say I blame them.

I stopped taking everything because I wasn’t diagnosed with anything so why am I taking drugs. That’s around the time I took myself into Mental Health and pretty much said I think I am losing my mind……Best thing I ever did for myself…..Between the passion of a MH doc and a Military Medical Case Worker, I was referred to every specialist known to mankind and monitored on a daily basis. My leadership was also offered a briefing to further explain why things had been happening to me and try to shed some light on a delicate situation. Of course, they didn’t want any briefing…. To add some more excitement to all of this my husband deployed to Afghanistan right after my father had unexpectedly passed away. Yep, I went over the top. I pretty much hit the bottom, kind of like an alcoholic would. I didn’t sleep for days, forgot where I was at, started crying in front of a high ranking military officer, kept bumping into walls, my feet wouldn’t work right and started falling asleep at my desk. Too much stress had brought on another flare up.

My neurologist ran me through 3 days of steroids (which I had a terrible allergic reaction) and I was put on 4 hour duty days…. I started Advonex as per the doc’s recommendation and got so sick for 3 months I couldn’t get out of bed….Did I mention my husband was gone? So once again, this wonderful medical team who had practically saved my life arranged to have me put on the new drug Tecfidera. This was one month before I retired from the United States Air Force and this dedicated medical team was determined they were going to make sure I could at least function with some sort of normalcy before they released me out into the world. They stamped MS all over my medical records like fireworks. It’s been three months since I left active duty and my physical and mental health is still not 100% but it’s so much better.

Some of my loved ones still don’t understand this….I AM NOT CRAZY! I loved the military and I loved my job but this disease does so much crazy stuff to you that you get labeled really fast. Morale of story…..this thing is CRAZY….get help when you need it and don’t challenge it alone! YOU ARE NOT CRAZY! I wake up some times with pains all over the place or crying for no reason…it’s all good. My husband makes me watch Wheel of Fortune to keep my brain moving and shaking…..Each time he does something out of the ordinary (can’t count things that have been lost of forgotten) it is now referred to as “pulling a Lisa”…I laugh about it because all of this makes me interesting and unique. I think I love life more now than I ever did. I miss a lot of the people that don’t understand but I have also made many wonderful new friends that do.

MS is not a show stopper….it only makes you appreciate life more and in my case, has given me a whole new outlook. LIFE IS GOOD!

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Comments

Lisa,
Sorry it has taken you so long to get an accurate diagnosis & on the proper meds. I have been on Avonex since I was diagnosed in 2007. I’m also thinking about making the switch to Tecfidera. I would be interested in how you are doing on this drug. I’ve heard so many horror stories about the side effects, but I am so done with the injections!!
I too play “Wheel” everynight with my husband 🙂
A big thank-you to you & your husband for your service ♥
My son-in-law is career USAF, so I know first hand, the sacrifices that are made.
Best wishes for continued happiness.

Wow, Lisa, you’ve been on quite a ride. I’m glad that you have a diagnosis now and hubby is home safe and sound. It is funny how MS can make our lives better in some ways. We are forced to focus on only the important things in life, and there just aren’t that many, really. We come to appreciate the simple things and cherish our loved ones even more. May you have many more years of peace and contentment.